Monday, May 11, 2009

Play Date with Magnolia & June

Ollie and Harper had friends(Mags and June) come into town. My friend, Julia, has been traveling with them on the road for a couple of months. So they get pretty excited to have buddies to play with. Ollie was especially excited to play in her home which was a tour bus!! She had a bunk she slept in with her own TV! He wished he had a bus to live on too. After the playing, I was able to see Magnolia's Mom and Dad play at the Glasshouse. They were amazing! I would put their latest album as one of my favorites of last year. If you don't have it yet, I highly recommend buying it. Check them out here.

This was a in depth game of follow the leader

Even Max had fun playing with them.

Harper and June discussing the state of the economy. Ollie in Magnolia's bed. see more pics here

Davy's medical History

I am "the mom" to 3 boys and a little girl. Through taking a microarray test, we found out that my Davy girl has a rare chromosome deletion. I have written this out in hopes to find others who have any similiar conditions.

Davy has a microdeletion of 1p31.1-1p31.3. She has panhypopituitarism, a cleft lip and palate, Congenital heart defects(asd, vsd, pda and had a CoArc). She had a surgery for malrotation of the intestines, and a g-tube put in to feed her. She has GERD with esophagitis dysphagia. She is on multiple medictions that need to be given round the clock. Three of those she will need for the rest of her life. To read about her journey start here.